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 Constant movements 
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Constant movements
Dear Friends,

I haven't written in a while, but I've been reading as many of the posts as I can. This forum is our major source of information and support.

Dad, 85 years old, is now in a long term care home (since January 2008). Due to his continuing falls and their increased frequency, his specialist and also the caregivers and us we all decided that for his own safety it would be best to keep in a wheel chair for most of the day and have him walk around only under supervision. Initially he was in a geri chair with a fixed table in front. He seemed to accept it pretty well and was serene and comfortable. Soon after we were told that we needed to get him a more comfortable and roomy reclining wheel chair with head support, etc...because the geri-chair is generally considered too restraining. So we got him a top of the line $6000 wheel-chair, which is fabulous.

My sister who gets to see Dad frequently (at least 3 times a week) has been telling me that in the wheel-chair he is constantly moving: continues to push against the table and just swings his torso around continuously. Also he moves his head and neck from side to side. When she asks him why he does this, he says he doesn't know and just smiles. My sister tried holding him in a tight embrace and he stopped moving, sighed and said oh thank God, it feels great not to move.

All this constant movement is wearing him out. My questions is:
Are these movements part of the Parkinsonam symptom and beyond his control?
Or is it perhaps because he is restless and tired of sitting in the same position and it's his attempt to get out of the chair?
It is very difficult to get a reliable answer from him.

He gets plenty of exercise: regular physiotherapy at least 3 times a week, plus half an hour active supervised walking in the morning and half an hour in the afternoon ,everyday of the week.

He is on Sinemet and his neurologist has told us that it would be unwise to increase his dose anymore.
He is also on Exelon.

Also, he has started grabbing people's hands who walk by. He is usually positioned in a common area in his wheel chair but sometimes when nurses or other people walk by, he just grabs theirs hand and holds on really tight.
If anybody can provide insight into my questions, I would really appreciate it.
SS


Mon Jul 13, 2009 8:56 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Shomy,

These are good questions for your father's neurologist. He could be experiencing tremor, "off-period" dyskinesia (due to "wearing off" of Sinemet), akithisia, etc.

The hand-grabbing is common for many with dementia.

Robin


Mon Jul 13, 2009 12:47 pm
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
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Dear Robin,

Thank you for your reply. We have an appointment with his neurologist on August 25th and I will definitely put forward these questions.

I was basically wondering if anyone else has witnessed similar episodes in their loved ones. He does not have any tremors and his movements are not shaky, but they are repetitive.

Are these movements caused by nervous agitation, or are they involuntary types of Parkinsonian movements? The answer would help us modify his environment accordingly to hopefully make him more comfortable.

SS (Shomy)


Tue Jul 14, 2009 3:04 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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My Mother wants to be constantly on the move- very seldom can she sit and relax. -when I get her to sit for a while she still moves and squirms around in the chair. She also moves a lot in her sleep. Her doctor said it is part of the Parkinsonism component. She struggles to walk and does fall
Sharon

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syt


Tue Jul 14, 2009 8:02 am
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post movement
My LO is constantly on the move. Slow, but still moving. Takes forever to get him seated and a few minutes later he is up and moving again! Drives me crazy as we have to start the whole process of sitting all over. Goes on like that all day long. When he finally does sit still he falls asleep. That is always nice as I get a few minutes break.
Heycon

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Wed Jul 15, 2009 12:50 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Heycon, Frustrating, isn't it! It takes me longer to get Frank settled on the couch, pillows behind his head, feet on hassic, and blanket if necessary, and then he's up again before I get into another room. The last 2 days he was so busy moving furniture, empting bookshelves, and rearranging anything he looked at that I followed him like a shadow. I usually go to Curves at 5:45AM because he's still sleeping but I leave a note reminding him that I went to exercise. This morning I knew I'd better stay put because I didn't know how he would be today. Frank has NO health issues, which I should be thankful for, but I do wish the mental and physical health declined at the same rate. I hope that doesn't make me sound careless, I do love him but have trouble remembering what life was before Lewy Body. :(


Wed Jul 15, 2009 7:04 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
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Thank you everyone for your inputs so far. From your responses it seems that the constant moving and squirming in the chair seems to be pretty common for LBD sufferers.
I wish there was something I could do to help him relax and sit still. Like I said before, it is wearing him down.
SS


Wed Jul 15, 2009 7:12 am
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Joined: Sun Jan 11, 2009 8:17 pm
Posts: 104
Location: Arkansas
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My mom is the same way always on the go, but she always was that way , so it's good to know that it's lbd too. I have to be her shadow also as her fall so easy. But I was wondering if there was some mild medication that might help. She can't even sit still at the dinner table, pushing away from the table or standing up. She takes exelon patch (doing will with it), sinemet durning the day and trazadone and melatatonin at night (been sleeping better since adding melatonin)


Wed Jul 15, 2009 4:34 pm
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Joined: Thu Feb 19, 2009 12:45 am
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Location: St.Paul
Post frustrating
Gerry,
Indeed, very frustrating and irritating and annoying and worrysome.
No, I don't think you are bad for thinking that. I know many of us have no life right now in the midst of Lewy, either.
My LO has so many health issues to go along with the Lewy. One big package of ___?_(we could all fill in the blank). :(
I sometimes wish his mind didn't know what was happening around him and that he didn't know where he was. I think that would be easier to put him in a NH when the time comes - which will be pretty soon.
I took him to the grocery store the other day. Let him push the cart. Now, mind you, he walks at a snails pace and uses a cane and trips over everything all the time. But while he was pushing that cart he was like a speed demon down the aisle. I would stop to get something off the shelf and when I turned around - poof - he would be at the end of the aisle turning. :shock: I would be chasing after him and he would look at me like "hurry up". Believe me, it was quite an outing. Won't be doing that again anytime soon.
Constant motion. Up and down. Situated in the chair then up he pops. He gets angry when I ask him where he's going or what he needs. Ooops, there I go, babbling on and on.
Best of luck to you. Sorry you are dealing with this too.
Heycon

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Thu Jul 16, 2009 12:52 am
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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Gerry, Heycon, Sharon,All...Sounds like many of us are in a similar stage of Lewy. We should not feel guilty..who would have thought the role of caregiver would have been thrust on us? We are not trained nurses, just caring LOs doing our personal best. This is a wicked disease we are trying to deal with.
My hubby doesn't get up as much anymore as he physically can't...its too difficult. But now and then he gets a head of steam going and he is like a jack in the box...up and down. He does speak a lot of "salad talk"...mixed talk not making sense..and gets angry that I don't respond the way he wants as I have no idea what he means. :shock: We are going through another phase..or lewy dip..not sure which but it isn't pleasant thats for sure. Upped the Seroquel to 100mg...going to increase the Sinemet but then the hallucinations will increase too. Darned it you do and darned if you don't.
I wonder, after going through all of this...will we welcome the end? Are we grieving in the here and now? Will it make it easier at the end? Will we be relieved that our LOs are gone and no longer suffering?
A neighbor asked me: what is the first thing you will do for yourself? I responded: go to bed, coverup and stay there for 2 days and just sleep...ahhhhh...sleep.

Prayers and kind thoughts to all.

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Dianne C.


Thu Jul 16, 2009 2:11 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
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Due to Dad's restlessness (night time too) and constant falls, we pretty much had to decide to get him a wheel chair and keep him in the wheel chair most of the time (using a safety belt or a tray that fits in front of the wheel chair). He will still ask to get up now and then but the nurses and caregivers get him out of the chair only when it's necessary (bathroom visits, change of clothes, going to bed, etc..) They do help him reposition himself at least every half hour and he does get lots of physiotherapy. Plus a private nurse gets him up and walking for half an hour in the morning and half an hour in the afternoon.

So he does get at least some kind of movement.

It's just so hard to guess whether his constant moving around and squirming in the chair is just another LBD symptom or whether it is due to feeling confined, restless and comfortable sitting in that wheel chair all day.

I would hate to think that we are restraining him in the chair to the point of making him frustrated and restless. But we really really had no other choice and it was the only way we could think of to keep him safe from dangerous and frequent falls.

SS


Thu Jul 16, 2009 6:56 am
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post falling
My LO fell today pretty hard. Was with the caregiver when it happened. When I got home from work I could tell he was out of sorts. Looked him over pretty good and he should have some decent bruising tomorrow. Caregiver looked him over good before moving him. I am wondering how he will be tomorrow. After the last fall we had a significant decline. At least he will be quiet and restful for the next few days. Once I put him in the chair he will stay put because he will be afraid of falling again. :( Can't believe he falls that hard and doesn't break anything. Amazing :shock:
The constant motion must be that they are uncomfortable and can't get in a position that feels good. I know when my legs ache or my back hurts I'm the same way. Moving around trying to find the good spot. They don't understand what is happening so therefore move around a lot. They can't verbalize what they are feeling either. Usually if I ask him he will just say "what's it to ya?" Nice. :x I just say I am trying to understand what you want - then the bickering begins. I should just keep my mouth shut - you'd think I'd learn after all this time!
Heycon

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Fri Jul 17, 2009 12:07 am
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Joined: Fri Feb 29, 2008 7:02 am
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Location: MI
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My Mother has had several falls- there are days she'll almost fall (usually tired) I'll catch her and sit her down. darn if I take my eyes off her she'll be trying to get up. if I ask her what she needs to do she'll say there is something she has to do- can't remember what. I wonder if there is a pysical basis for the restlessness.
Last night she was up every couple of hours and wanted her shower at 6AM. When she hasn't slept much we'll have lots of hallucinations, potential falls and generally out of it more than usual.
good luck
Sharon

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syt


Fri Jul 17, 2009 7:37 am
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
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I am amazed at the stories of the loved ones that sound exactly like the actions of my own hubby !!! It is difficult to take care of the household and meal prep when GW is up again almost before I round the corner of the room, even after all the preparations of getting him settled-footrest, neck pillow, TV on acceptable channel etc. Of course he does not really watch the TV any more but instead runs his own mental program where he is trying to pick things up from the floor or waving his hands in the air. He also has fallen a few times this month- trying to sit without getting to the proper place -- thankfully no injuries. So I have to be in the same room at all times now. He doesn't like that any more than I do- gets annoyed having to do everything my way-- is also talking some garbled words.
It helps me to know that others are dealing with similar problems. We also appreciate the many helpful tips that have been given here.
Wishing a peaceful night sleep and restful tomorrow to all of you helping angels.
Di

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Di


Sat Jul 25, 2009 11:55 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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It's a comfort to read all these posts and know others are out there and living with this disease. I was just feeling the same way like you are about the TV, but I liked what you said about how he "runs his own mental program where he is trying to pick things up from the floor", My hubby does that also and has fallen 3 times this week . I call them "airball sitting". It's like they sit in the air, no chair or couch around, just sit down in the air, without getting to the proper place. Here again, thankfully no injuries except a couple bruises. I didn't know this was typical in these people.
Hope you have a wonderful restful night for a change!


Sun Jul 26, 2009 1:12 am
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